What happens when you have a disability that's so embarrassing that sufferers are afraid to talk about it? Tessa Miller has written an incredible essay about life with irritable bowel disease, shedding light on what it means to live with an invisible disability.
Miller, who writes for io9's sister site Lifehacker, posted her article on Ladybits today. It packs an incredible emotional punch, while also conveying a lot of important information about both this disease and the cutting edge treatments that Miller has used. Here's how she describes what it was like when the disease first hit:
I was used to gut pain and stomach aches — something I'd lived with my entire life — but this was unlike anything I'd felt before. My insides were being shredded, pulled, lit on fire. The cramping was so intense, it was as though my body was trying to rid itself of my intestines through some sort of disgusting birth. The next day, my mouth and throat erupted in throbbing sores. I chalked it up to extreme food poisoning or flu, took a handful of Imodium and Tylenol, and clenched my way through a flight to Illinois.
Things got worse at my parents' house. The pain and cramping escalated. I couldn't eat and could barely speak. While my family celebrated Thanksgiving, I stayed in bed except to go to the bathroom fifteen, twenty, thirty times a day. I wearily asked my mom to take me to the emergency room after filling the toilet bowl to the brim several times with nothing but bright red blood . . .
Increasingly weak, I had several accidents trying to get to the bathroom. As a proudly independent (and easily embarrassed) young woman, I was mortified. My mom and step-dad hauled me back to the ER, and I was swiftly ambulanced to a different hospital where I spent the next week in a haze of meds and tests.
I couldn't have predicted it at the time, but this was only the beginning. The following months brought hospital stay after hospital stay, rounds of different drugs, multiple diagnoses, and a life-saving fecal transplant (that's right—someone else's poop transferred to my digestive tract). This wasn't something I would, or could, simply "get over"; it would ultimately change the way I think about my body, my health, my relationships, and my life.
Miller goes on to explain that inflammatory bowel disease (IBD) is an immune system disorder. Basically, your immune system attacks your guts, trying to expel them from your body. The result is a constellation of symptoms, from inflammation to internal bleeding, which result in exactly what Miller describes – pain, fear, and the embarrassment of having a disease that can make you shit yourself. What's so brave about Miller's essay is that she's describing something that many people who suffer from this disease find too difficult to talk about.
A close friend of mine who suffers from the same condition once said to me sadly, "It's hard to explain to people that you have a crippled ass." Because IBD is a chronic problem, and not a disease that can be cured, it falls under the category of disability. Miller has to learn to live with this physical ailment for the rest of her life, and she does an incredible job describing both the horror and the humor of everything from stool samples to her eventual fecal transplant.
For many people who suffer from invisible disabilities, there is a double stigma – first, the stigma of the disability; and then, the stigma that comes when you bring it up and call attention to it. From the outside, nobody can see what Miller is suffering. But she eloquently brings us inside the lonely, confusing world of her illness, helping to ease the sting of those stigmas. Not only does she demystify the experience of being sick, but she also introduces us to the pure science geekery of what it's like to have a fecal transplant. More and more, people are getting this procedure where – to put it bluntly – you spray someone else's poop inside your own colon. The procedure saved Miller's life, and is likely to save millions more as time goes on.
And now she is trying to carve out a new life, living with a disability that no one can see – and that it's hard to talk about in polite company. She faces her future with grace and pragmatism:
I wasn't sure what living with just IBD would be like. Now, I have good days and bad days, good weeks and bad weeks. My immune system still isn't what it used to be—colds and flus knock me out longer than they used to, and if there's something going around, I'm sure to catch it. I've come to accept that my body is different than it once was, and I have to be patient while learning how to best care for (and appreciate) it. I continue to take a big handful of pills everyday, watch what I eat and drink, and try my best to minimize anxiety (the mind and the gut arevery closely linked, even for people with perfectly normal digestive systems). I have "mini" flare-ups that make my joints burn and my mouth fill with ulcers. I pay the price for accidentally eating gluten once in awhile. Too much anything—stress, food, fun—takes its toll on my body.
Miller has written one of the best science articles I've read this year. I highly recommend it.
You must read the full essay over at Ladybits. Warning: You may find yourself crying by the end.